The adventures of two little dragons (Maisie and James) who keep defying the odds and changing the world, one day at a time. James suffered pProm at 12 weeks; the twins were micro-preemies born at 27 weeks weighing 1lb 11oz.

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Sunday, July 8, 2012

And down and down

Jimmy and I will both tell you that Saturday night, 07/07/12, was one of the most difficult nights of our lives. We will spare you some of the details because it's too painful to go over again.

When your child is helpless, you need doctors to be on board with your strategy and you need them to be objective. It took a long time to get there, but we are finally there. One day, these doctors will believe in our son. He is capable of accomplishing extraordinary things. Do not underestimate him - or us.

***
James was hovering around his birth weight of 770 grams earlier this week (we are going to use grams because it's a heck of a lot easier than trying to convert it to pounds and ounces - sorry about that). When he had surgery on Friday, they began replacing fluids lost out of the drain and tried to use fluids to bolster his blood pressure, which was in the tank. Unfortunately, nothing was working on James' blood pressure. James started retaining all of this water and over a course of 24 hours weighed in at over 1200 grams, and was on course to double his weight. The edema swelled every inch of his body, including eyelids and ears. The nurse told us he would continue to get bigger, and that nothing would correct this.

Nothing was working to bring up his blood pressure and the doctors weren't being very creative about it. They informed us that he was working on keeping his heart, lungs, and brain functioning and that the rest of his organs were not operating. James had not peed in over 24 hours, and his kidneys and adrenal glands were not responding to treatment by the time Dr K spoke with us Saturday night.

They asked us over and over to make a decision. We told them to save our son - over and over again.

***
Steroids had been ordered but the dosage wasn't high enough. Dr K ordered a rescue dose of dexamethasone and put it on right away. They did several blood transfusions over the course of the weekend. We stayed in a room close by and visited every couple of hours to monitor the situation and be with our amazing son James. We told him over and over again how strong he was and how proud of him we were. Again, he was not expected to make it through the night.

***
By the morning, Dr K met up with Dr Hawkeye and a new strategy was born. We felt glad to have new eyes on the situation, but Dr Hawkeye was realistically grim. He thought he could get James stable enough so that we could get rest. The new plan included concentrating James' IV medications and fluids, bolstering his electrolytes to combat dehydration, and continuing the rescue steroids. He added a diuretic Lantix to help James pee. We were hoping that this would work.

***
We went home for the day and tried to get some rest. I had cried so much that night that I felt like I had been underwater. We were physically, mentally, and emotionally exhausted. But we never got a phone call. In the afternoon we returned to find that James had started to pee and that his blood pressure was up. We had never been so happy about basic life functions. He had turned the corner, thanks to a little objectivity and creativity from his medical team.